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Wednesday, August 06, 2008

When Children Die: What to Do. Or Say. Or Not.

A friend called today with a few questions. Her friends in Seattle lost their six month old baby yesterday. Suddenly. Inexplicably. While she was at her first day of daycare. The baby wasn't eating, wasn't feeling well....when mama arrived she saw the paramedics....it was too late. Their baby died.

My friend wanted to know...should she go? And....could she help, how could she help, should her children come too, what should she say, should she say much, and why was this causing some strange emotional clog for her, my friend?

We talked for a while on the phone; when we hung up I felt my own emotional upheaval - so sad for this family, so angry at the sudden loss of this baby girl, but gratified that I could offer any helpful words.

There is no manual for what to say, and one extremely good reason for this is that no manual would ever work for every family, every encounter.

But because I have a big mouth and am a self-appointed public service educator, I am going to go ahead and tell you what was helpful or memorable for us in the immediate aftermath of Elijah's death:

If you can visit them or attend the memorial service, do. If you can offer your presence, it will be appreciated. Even if you cannot offer any words at all, just be there. Just that is enough, because we (the parents) know that there are no words.

If you can offer words, do express your sympathy, your disbelief, your extreme sadness. There are no effective words of consolation to offer -none. When a child dies, everyone loses.

If appropriate, do say 'this is so fucked up' to the parent(s). It is probably what they are thinking anyway, and may feel comforted that you can say it aloud with them.

Do allow room for anger. Sadness is to be expected, and sometimes the anger is a delayed reaction, but for many it is immediately interspersed with the extreme agony, and sometimes is a hard emotion to justify or accept. I felt very ripped-off and angry, but I also felt like it was a 'wrong' emotion to be experiencing at the time.

If there are other living children, do bring them gifts. Any small new shiny object that captured my daughter's attention and distracted her from noticing how incredibly sad and checked-out I was at the time, was greatly appreciated and remembered. The day Elijah died, a friend came over with a new doll for Supergirl. One observer thought it a bit morbid; bringing a baby doll over to a girl who had lost her baby brother. They were wrong. It came with clothes and accessories and kept her interested for blessed minutes, maybe hours...I really can't remember. Another friend overnighted a package to me which contained a doll and some small games for Supergirl (which I still have and remember their source) and books about loss and grieving for me. I still have never read one of the books, but the thought and desperate desire to help that went into that package was palpable and memorable.

Do bring food if you live nearby, and/or organize a community food drop-off and/or freezer for the family. Something I will never forget as long as I live, was one of my dearest friends driving up our mountain only hours after Elijah died. Hours after we had retrieved our daughter from her house, leaving there with one carseat empty. She came bearing at least three grocery bags full of pre-made salads and ready-to-eat gourmet grocery food. She sobbed as she stocked our refrigerator, "I'm Jewish. We feed people. I don't know what else to do." We would never have eaten anything until our family showed up if it had not been for her. Seriously.

Do go to the funeral home with the parents if they want you to (especially for family members and closest friends). You may think it is a private meeting meant for just the parents, but they have no idea what they are doing and could probably use someone nearby to hold them up or offer them a valium when the funeral director asks them: "Cremation or burial?" Also helpful if someone can just write that damn check for them. Our cremation bill was not at all on the high monetary end, but having to see that check to the crematorium come back in my bank statement was agonal.

Do delegate responsibility to others you see who wish to help and appear to need direction. The last thing you want to ask of the parents is any sort of coordination efforts at all.

Do not bring a child who is near the same age of the child who died unless you are specifically asked to by the parents. Really. Especially with babies, and I am not kidding At All.

Dosmack politely intercept the person who may try to violate the above suggestion. Offer to hold their child for them so that they may offer their sympathies and then leave.

Do not repeat useless and meaningless platitudes just because you have heard them in previous similar circumstances. Unless you are unfortunately accustomed to frequenting the funerals of children, you have never been in similar circumstances. Examples: S/he is in a better place; (God) never gives you more than you can handle, etc...

On another note here, because this is a whole separate post (that I believe I have written in several segments already), but if the child who died was a child with special needs and not dying a horribly painful death, then I cannot stress enough, DO NOT EVER suggest that the death was a blessing for the child or family in any way. EVER. These are the most insulting words ever: they imply that the child who is lost was loved less than your own (or their own) 'typically developing' children. Do not even hint at or suggest that there is relief of a burden lifted. EVER.

Do not ask the parents if they are going to 'have another baby'.

Do not tell the parents 'what you think they should do' regarding having another baby, waiting to have another baby, or not having another baby. Actually, don't even utter the words 'another' or 'baby' and you are probably safe.

If you are close with this person, do call them after the memorials or funerals are over; after their friends and family have left, after the initial aftermath. There is much loneliness ahead, regardless of the number of people around them. And the reason I said, 'if you are close' is because I mean you need to call her/him every day or every 48 hours. And for months. You should not demand a conversation, just leave yourself open for one and let your friend know you are there. This 'small' act by a friend very possibly saved my life more than once.

Do not tell the parents that you 'really should get together more', or that you 'want to help' if you: can not, will not, are too hurt and afraid yourself to be of support, or just live too far away for it to be feasible. It's really okay if you are unable. Like I said, when a child dies, everyone loses. And everyone feels lost. But disingenuous offers are just that. Disingenuous.

Do not tell the parents that they are 'stronger than you are' or that 'you would not be able to get through this'. While the good intention behind these words is obvious, they fall into an open gaping wound and come across to someone in a very sensitive place, sounding more like, 'I cannot believe you have not killed yourself yet. You must not love your child as much as I love mine. For I would not be able to go on.' Also, the 'stronger'? Bullshit. Nobody wants to have to be that strong. Cry your fucking hearts out. A kid died. Let your legs buckle with the blow of it. 'Strong' is for fan belts, triathletes, and the airplanes which carry me up in the sky.

Do be willing to undress the person who is grieving if she passes out drunk, and/or put her children to bed for her. Thank you, Squid. Very important and realistic information.

Do consider carefully before you send flower arrangements or live plants, as Julia mentions: One thing I would add is that many bereaved parents I know had a hard time with the flowers that people sent to them-- they felt like the flowers needed tending to, like letting them die was another (small, but somehow significant) loss. So it might be good to try to figure out how the parents might feel about that before sending. Two people sent us edible arrangements-- these are cut and decorated fruit baskets arranged to look sort of like flowers. You'd think it would be morbid to eat those under the circumstances, but it wasn't. It was strangely satisfying to pluck things off and consume them. - Indeed. Thank you, Julia.

Do not, in the months following, frequently place your baby on the bereaved mother's lap, saying 'Here! You need a baby fix!' Unless the mom grabs for your baby, no she doesn't. And you're making her feel very awkward about hating your baby on her lap.

Do ask everyone you know if they have any friends or family with a vacation home they could offer to the family. Chances are, the family will want to escape for a while after the memorial. Cheers to Lori for reminding me how incredibly important that one was/is.

Do not clean everything of the child who died. Do not clean anything or put it away unless the parents ask you to. (I did. I asked others to put his things away for awhile.) You do not want to remove every last trace of this child's scent from their lives. Thank you, Bree.

Excellent list. Especially the platitudes. Can't stress that enough. And this part is important for a long time afterwards, probably forever.

One thing I would add is that many bereaved parents I know had a hard time with the flowers that people sent to them-- they felt like the flowers needed tending to, like letting them die was another (small, but somehow significant) loss. So it might be good to try to figure out how the parents might feel about that before sending. Two people sent us edible arrangements-- these are cut and decorated fruit baskets arranged to look sort of like flowers. You'd think it would be morbid to eat those under the circumstances, but it wasn't. It was strangely satisfying to pluck things off and consume them. And kids (our daughter and friends her age who were over playing with her) really enjoyed that too. Sort of like those toys you were speaking about-- a nice distraction for them.

Well put Gwendomama!! I hope I NEVER EVER have to offer this type of advise to someone, but you did an excellent job!! Julia's comment hit home too... all those living plants came home to my house and died... I coulda done without that!! And the food thing was GREAT! We wouldn't have eaten either if someone else hadn't fixed stuff to put in our fridge/freezer!!Carrie

I can't say "I know how you feel". I've never lost a child, I have lost a parent and I remember my own grandmother sobbing over my father's grave saying, "No one should ever have to lose a child". I didn't understand that then, I was 19, I thought it bad enough that I lost my dad, how could she think her pain was any worse. Now I know. Now I know exactly how she felt. As much as I love both of my parents, g-parents, etc, the lose of my child wouldn't even compare.

The most surprising part of counseling for me was that this counselor would get me to act out scenes and the one that was the most helpful was the one where I said to my father (who obviously wasn't there physically) "what in the hell were you thinking, you knew what you were doing was going to kill you and you were so fucking selfish that you did it anyway even though you knew you were going to leave me here, all alone, an only child, how in the hell am I suppose to cope at the age of 19?"

That was also the most refreshing session.

*My father died from aids, he was gay..that's my reference to "you knew what you were doing was going to kill you"

So, that's my piece of advice, first of all, don't say, "I know how you feel" unless you have really stood in that persons shoes. And, then of course, encourage the person to be mad, mad at themselves, mad at God, mad at whomever, just if it is a feeling they have, then be there and help them have it. And, girlfriend, that was really well written!

This list needs to be published for everyone to read. Sometimes people dont know what to say/do.I just joined this mothers group last week and one of the mothers children was run over by her dad on accident. He didnt see her. Each parent thought she was with the other. This can happen to anyone.I grieve for that mom so bad. So bad. You just cant help but look at your own child and think "What in Gods name would I do?" Im gonna email you list to the momma's group. I think it will be appreciated.Thank you!-Shannon in Austin

Maybe we're unique in this but after my daughter died, we got through the memorial service and then ran away for a week. I didn't want to talk to people and hear the condolences any more. I just couldn't take it. And I was exhausted. So we just disappeared for a week.

So if you are lucky enough to have access to a vacation home, offer it. I also like to give a cd of the songs that helped me in my darkest moments. And a book called "Tear Soup".

Thanks for helping people with what to say/not to say. You are blessing many families through this wisdom!

Have to echo on the flowers/plants. I don't know if it's still done, but when my mom died it was in vogue to send azalea plants. I must've received 5 of them...all died. Not a great idea to send a plant that dies easily to the bereaved.

thank you for this. refreshingly honest and free from the sort of platitudes that usually come with the territory. a version of this ought to be adapted for anyone encountering grief or tragedy of any kind.

I am ill thinking about this -- the child died in my town, and I thank you for trying to tell us what we might say. I probably don't know this family, but if I do, I will try my very best to offer something more than platitudes and disingenuous help.

I totally agree with not saying, "God never gives you more than you can handle." Bull Crap! Like if I were a weaker person, my son would still be with me????

And, I just have a note for the last reader suggestion you added to the post. When my son died, someone came to our house while we were still at the hospital (we were there for two days) and cleaned our house... not a bad thing right? She washed every sheet, bumper pad, crib blanket, every little t-shirt and sleeper that still smelled like my son. I have nothing - NOTHING that smells like him. His room was even cleared out. All I could do was shake my head and sob/cry/scream.

this is fantastic and TRUE! I agree with everything! It's funny (or not) because just today my brother said to me: "well, you know, I think it's actually more sad for someone who loses a healthy child suddenly and tragically.....don't you?" Um, NO! I could strangle the people who feel that way, but it'd most of my family sadly. I'm sorry for the new mom in our club........it sucks.

You've written a wonderful list. But you left out the one that pissed me off worse than anything else. "It's God's will. We can't understand, but you just have to know it's all part of God's plan." Someone almost got hurt for saying that one.

I've lost both my parents in the past year, dad just passed on July 12. This list is VERY helpful with regard to loss in general, and what to do (or not do) when trying to comfort those who have lost a loved one.

The food thing? HUGE! Only one person thought to bring food when both my mom and dad died. It was the same person (a neighbor) and GOD BLESS her for it b/c I'm a single mom, with a now 2 year old daughter & a lot of things needed to be done with regard to funeral planning, etc. I did not have time, energy or even interest in cooking. But my daughter, and I, needed to eat.

I also love the point about making sure you CALL or WRITE the person after the funeral, memorials, etc. are over. Grief is a strange thing, it comes and goes in waves. I cannot imagine losing a child, but I do know how angry/sad/distraught/insane, etc. I've been since losing my folks.

Phone calls, cards, or just dropping by to check on me would have been nice. Very few people bothered to call or send cards initially, who knows why? But even fewer have kept checking in on me. I guess they think I'm "over it" if I'm not falling apart &/or committed to the Loony Bin. Guess what? I'm not "over it"...

Anyway, I could go on and on. Perhaps I need to blog about this myself (from the loss of a parent perspective).

But I wanted to THANK YOU for this wonderful and thoughtful "how to" post in the meantime. Not enough people understand just how hard it is to walk through the seemingly endless stages of grief. Here's the deal people; Just be there. Tell me how much it sucks that the person I loved is gone. Then hold my hand & shut the hell up.

P.S. I'm really sorry to read about the loss of your own son. THAT SUCKS - more than I can even imagine.

this is such an excellent post. thanks for sharing this. might you be willing to have it reprinted as a guest post on the new Bridges site?

The link for Bridges is here: http://awarenessbridges.blogspot.com/Information here:http://awarenessbridges.blogspot.com/2008/07/about-bridges.htmlHistory here:http://awarenessbridges.blogspot.com/2008/07/bridges_28.html

When we lost our daughter, we got all the standard, "She's in a better place", "She is better off now", "God doesn't give you more than you can handle" and probably every other one you could think of.

She had been injured three years before and just took 40 months to finally leave us. It was painful. Like nothing anyone ever wants to go though.

But I think the worst thing people did was keep asking us what they could do. I and my husband just lost our daughter, I had a house full of children left grieving the loss of a sibling, I could not think. What was I supose to say?

Then, people quickly went back to their own lives and within a couple of weeks we were forgotten about. And it was as though we were expected to just "go on" like everyone else.

No one brought food. And the only thing anyone asked after that was "How you doing?" Well, HOW DO YOU THINK!

Bring food. DON'T ASK the grieving family what you can do.Don't expect them to "be over it" or "back to normal" in a few weeks.And don't keep asking "How are you doing?" That drove me nuts!

A co-worker who was a couple months ahead of me in her pregnancy, while holding her 6-week old baby girl said that if I needed a "fix" just let her know. And that she was sure that if I came over during one of her screamy, cranky times I would feel better...

She couldn't even finish the sentence...that my babies were dead.

Really, an excellent list. I'm going to try to link to this on my blog.

I'm so happy you agreed to share this on Bridges. (it seems forever ago that I asked!) I think this list is really terrific and should be required reading for anyone who knows anyone who has lost a child. thanks again!

Here from Bridges. What a great list -- it is going into my "favourite posts" folder. I agree with the comments about "being strong." I also grind my teeth whenever someone tells me, "I can't imagine..." No, you can't -- and I think what you really mean is "I don't want to think about it."

I would add to the list -- make a note to call or write/e-mail the parents around the "anniversary" of their loss. Knowing that people remember & still care means so, so much.

The two year anniversary of my son's passing was last week and while yes day to day functioning has gotten easier, the loss is still every bit as raw.

I agree with everything on the list especially about the meaningless platitudes (which are meant only to make the person saying them feel better, not the people grieving). Silence is fine, just acknowledging the loss is fine, don't fill the silence with words because of your own discomfort. I don't mean that to sound harsh but when a child dies, there is no making sense of it, there is no making it better. Just say you're sorry, give a hug if possible and be aware that your ears will be needed more than your mouth in the days, weeks, months and years to come.

Please don't change the subject, divert your eyes or excuse yourself when a grieving parent mentions their deceased child. Yes there are many emotions to confront but please, don't act as if it never happened or that my child never existed. Remember anniversaries and birthdays, ask how the parents are doing later, after the memorials and funerals are over; yes, your life goes on but your friend has experienced a huge loss, please don't ignore it because it's easier.

And finally, I cannot stress this enough: Don't tell the parents of a deceased child that you, ''know how they feel'' - No, not even if you have experienced the loss of a child. Nope. Not even then because you don't know how they feel, you aren't the parent of their child, you're not inside their heads. That is one of the things that still to this day angers me the most; when it is said in comparison to something ridiculously incomparable it's terribly insulting but even in with the best intention, from one parent of loss to another, it still rings false to me; it still feels like another way to minimize my child, my feelings, my loss because so often it's said in such a way as to ''head off'' the parent talking about their child and their own feelings.

WOW - Didn't mean to get so intense but like I said, two years later, it's still remarkably raw.

The two year anniversary of my son's passing was last week and while yes day to day functioning has gotten easier, the loss is still every bit as raw.

I agree with everything on the list especially about the meaningless platitudes (which are meant only to make the person saying them feel better, not the people grieving). Silence is fine, just acknowledging the loss is fine, don't fill the silence with words because of your own discomfort. I don't mean that to sound harsh but when a child dies, there is no making sense of it, there is no making it better. Just say you're sorry, give a hug if possible and be aware that your ears will be needed more than your mouth in the days, weeks, months and years to come.

Please don't change the subject, divert your eyes or excuse yourself when a grieving parent mentions their deceased child. Yes there are many emotions to confront but please, don't act as if it never happened or that my child never existed. Remember anniversaries and birthdays, ask how the parents are doing later, after the memorials and funerals are over; yes, your life goes on but your friend has experienced a huge loss, please don't ignore it because it's easier.

And finally, I cannot stress this enough: Don't tell the parents of a deceased child that you, ''know how they feel'' - No, not even if you have experienced the loss of a child. Nope. Not even then because you don't know how they feel, you aren't the parent of their child, you're not inside their heads. That is one of the things that still to this day angers me the most; when it is said in comparison to something ridiculously incomparable it's terribly insulting but even in with the best intention, from one parent of loss to another, it still rings false to me; it still feels like another way to minimize my child, my feelings, my loss because so often it's said in such a way as to ''head off'' the parent talking about their child and their own feelings.

WOW - Didn't mean to get so intense but like I said, two years later, it's still remarkably raw.

I guess the only thing I would add to your excellent list is that you should realize that everyone has an individual way of grieving, so what's helpful to one person may be resented by another.

For example, after my twins died, well-meaning people brought me food. The last thing I wanted to do was eat and having to watch all that food go bad and finally to throw it all out was incredibly depressing.

Similarly, one friend had apparently read somewhere that grieving parents want to talk about the dead babies and would constantly refer to the twins. She had the best intentions, but I really, really didn't want to hear anything about them unless I was the one to bring the topic up.

That said, I'm constantly amazed by how people just do not seem to understand that, for the newly bereaved, it's often very painful to see pregnant women or other people's babies.

A couple of weeks after the twins died, I went to my niece's first birthday party. One of the guests was my sister-in-law who was very, very pregnant. I took one look at her and went upstairs, where I went into the guest room, closed the door, and sobbed. My family has never forgiven me for "ruining" my niece's birthday party.

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